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KAREN KAMISAR, Chronic Liver Patient: I know where it is. It probably–
LEE HOCHBERG: Karen Kamisar heard last month that it could soon be harder to get the liver transplant she needs to save her life.
KAREN KAMISAR: I was driving in the car when I first heard about it. And it was devastating. (talking to child) Good. That’s right.
LEE HOCHBERG: The 41-year-old mother, a Seattle attorney, has an autoimmune disease that causes blockages of her bile duct. There’s no cure, and she’s likely to face liver failure after a few years.
KAREN KAMISAR: For me, a transplant is my only opportunity to survive and to live and to see my son grow up. There is nothing else out there for me but a transplant. Without it, I will die.
LEE HOCHBERG: Seven thousand patients now await live transplants, but only four thousand livers are donated each year. In the past, the sickest patients, those expected to die in a week, had first claim on the organs.
The new liver policy would give status one or top priority only to those dying people believed to have the best chance of long-term survival after a transplant, those suffering acute liver failure. These are people whose livers suddenly shut down after an infection or ingestion of poisonous mushrooms. People like Kamisar, with chronic conditions, long and developing, or those with hepatitis, cirrhosis, or tumors could go no higher than status two, a lower priority, even if death appears imminent.
KAREN KAMISAR: It is extremely frightening. For all of us it’s just about surviving and living and watching our kids grow up. And you feel like that’s been taken away from you. It’s cruel. It’s very cruel.
LEE HOCHBERG: The United Network for Organ Sharing, or UNOS, says it’s trying to more efficiently utilize donor livers. UNOS, a group of transplant experts who control organ distribution for the federal government, issued the new transplant rules last month. Its president, James Burdick, says it doesn’t make sense to use scarce livers on chronically ill people who might be too sick to use them for long.
JAMES BURDICK, United Network for Organ Sharing: How can you take a chronic patient who has a 25 percent less chance of surviving if they get that liver and give the liver to that patient, rather than to me, the acute liver failure patient? This is a way of providing the best use for this scarce precious resource that we have stewardship of.
SPOKESMAN: If you were in the hospital in a coma and then somebody comes in as a status one, they would get that liver.
LEE HOCHBERG: In transplant clinics, chronic patients who’ve waited for a liver want to know what the new policy means for them. The University of Washington’s transplant chief, James Perkins, says typically three to four patients a year come into his program with acute illness. So on the new plan, three to four chronic patients would be skipped over. A sudden spate of acute patients, as in a few years ago, when five people in Oregon were poisoned by mushrooms, would further hurt his chronic patient’s chances.
DR. JAMES PERKINS, Transplant Surgeon: If we’ve got four or five status one patients in today, all our status two’s would be disadvantaged because all those little livers that we get in this week and next week, would all go to the status one patients, and those status twos might deteriorate and then go into a coma and then die and not get the liver.
LEE HOCHBERG: In the past, chronic patients near death waited about 13 days in ICU before a liver was found. That wait could be tripled under the new plan, and more of them could die as livers go to acute patients. University of Washington bioethicist Dr. Thomas McCormick says it’s a needed tradeoff.
DR. THOMAS McCORMICK, Bioethicist: We’re making a shift from attempting to rescue anyone who is near death, almost without regard for the possibility of success, to a more careful assessment of success, so that when we do intervene, it’s more likely to provide a benefit.
LEE HOCHBERG: McCormick says the new policy could shepherd in a new era of rationing.
DR. THOMAS McCORMICK: Rather than sort of having a blind duty to resuscitate everyone, we’re now saying some people have a far greater chance of living than others, and we have a duty to maximize life for those in those cases.
LEE HOCHBERG: But Karen Kamisar is not ready to accept that perspective.
KAREN KAMISAR: People are sick, and when we have sick people, we treat them, and we make them better. That’s what medicine is all about. And we don’t let someone die because someone else may–may do better.
LEE HOCHBERG: Those who specialize in treating alcoholics say there’s another large issue raised by the new policy, the issue of stigmatizing illnesses. The medical director of Oregon’s Springbrook Treatment Program, Dr. Greg Skipper, says a quarter of the adults who get liver transplants have alcoholic cirrhosis. He questions why they are grouped status two when their post-transplant survival rate is similar to other transplant recipients.
DR. GREG SKIPPER, Alcoholism Specialist: This could well represent stigma against people with chronic illness, particularly people with alcoholism. There is a stigma in the public about alcoholism, and this may be a manifestation of that.
LEE HOCHBERG: Skipper says basing access to care on survival rates is the start of the slippery slope.
DR. GREG SKIPPER: Would they set a standard that women get preference, you know, with transplants because they tend to do better, or age, or race, to look at outcomes with race? We could be moving toward a time when we’re going to exclude care for a lot of chronically ill people, saying that the payoff is not as great.
LEE HOCHBERG: And some experts say the rationing policy shouldn’t even be necessary. They say UNOS makes the liver shortage worse by distributing livers in the local areas in which they’re donated, rather than sending them to where the sickest patients are. A liver donated in Seattle, for example, usually is transplanted in Seattle, even if sicker patients are elsewhere. That doesn’t seem fair to Dr. John Roberts, who has more than 700 patients on his waiting list at the University of California in San Francisco.
DR. JOHN ROBERTS, Transplant Surgeon: The current system does not allow wide enough sharing to provide livers even to those patients who are at the most urgent need.
LEE HOCHBERG: Craig Irwin, the head of an advocacy group for patients, agrees. The son of two transplant patients, Irwin says that UNOS distributes livers locally because it’s good business for local transplant programs that need livers, not because it makes any medical sense.
CRAIG IRWIN, Transplant Patient Advocate: You have the smaller transplant centers who do fewer transplants but make up the bulk of the UNOS membership that are concerned about their existence. So as an organization, UNOS has decided to protect their interest, instead of looking out for the public’s interest and the interest of the patients out there.
LEE HOCHBERG: UNOS says shipping more organs across state lines would drain smaller programs of livers they need to survive. The University of Washington, for example, says its program could fold if donor livers in Seattle were sent elsewhere. UNOS says that would hurt Seattle area patients who can’t travel and discourage Washington State residents from donating organs.
JAMES BURDICK: I think the interests of the small centers, if you will, need to be maintained. Those really represent the local areas where local patients, the more disadvantaged patients, are able to receive their care and their transplant. And they also represent the place where the local impetus for organ donation originates.
LEE HOCHBERG: With debates raging over the proposed priority plan and the larger question of how livers are distributed, San Francisco’s Dr. Roberts argues federal officials should re-examine transplant policy.
DR. JOHN ROBERTS: The government will probably have to step in and tell UNOS that they need–that this is an important priority for Americans, is to have the system fair.
LEE HOCHBERG: The Department of Health & Human Services convened public hearings this week amidst rumors that it may usurp UNOS’s authority to control liver allocation. UNOS’s Dr. Burdick says that would be short-sighted.
JAMES BURDICK: UNOS should continue to make the policy. I think it would cause terrible problems with the allocation system and with organ donation in this country if the Department went against that.
LEE HOCHBERG: Karen Kamisar thinks change “is” needed. She and her husband are at the government hearings this week. At those hearings, UNOS announced a small change. It said, any chronic patient who’s in the hospital on January 20th, the day its new policy takes effect, could be upgraded to status one priority if their condition deteriorates rapidly. That’s not good enough for Kamisar, who hasn’t yet been hospitalized. Like thousands of other chronic patients, she has less assurance than ever that a liver will be available when she needs it.